The psychologisation of a disease occurs when it is believed that psychological states cause or drive or sustain symptoms of that disease.
🚪Front door psychologisation: it's in your head, causes the disease
🚪Back door psychologisation: influences, sustains, drives the disease
Gez & Danny's book looks fantastic and a real resource for those with & without #LongCovid.
Sincerely hoping that this view that: "there is a huge degree that our emotional state can drive symptoms by sending us into a state of sympathetic overdrive"
is not referenced...
Gez is more than welcome to have this as a personal view. Yet it is the reasoning that those who psychologise the disease can take
It is why we have 'integrated' care & research that focus on CBT as stress and anxiety are seen are sustainers of the illness.
There is no evidence
It's also the hypothesis that 'brain trainers' take such as Gupta, Howard, DNRS, Chrysalis etc take. It's the sympathetic nervous system stuck in overdrive that we can influence through top down, psychological intervention.
Again no evidence
It's also present in mainstream medicine especially in conditions that affect women: fibromyalgia, chronic pain, endometriosis, migraine, FND, MUS, IBS & Autism, ADHD. It's why CBT is everywhere.
Again it's not based on decent evidence
The psychologisation of disease is now very slippery and subtle as the goalposts of the definition keep moving to sustain the theory.
There's often sympathy, personal experience and a belief it's physical but....psychology still influences.
We must recognise it
#pwLC & #pwME deserve excellent psychological support to help cope with the trauma of the illness. Yet this must be separate from symptomology and the disease pathways. If they are 'holistic' then patient harm & PTSD are more likely.
This is a key difference.
Twitter has already blown up discussing this and for everyone's sake it would be best resolved. But if a significant book on #LongCovid perpetuates this myth it does a disservice to #pwLC & #pwME.
Would also like to thank Gez for all the meaningful work he does for #LongCovid especially when ill himself. This isn't an angry thread but a way to hopefully dialogue, resolve and progress through dialectic as it's a complex and critical area and needs discussion.
UPDATE: Complaint about CISCO21 Long Covid Exercise Study
🚩Serious risk of patient harm
RESPONSE: PEM is primarily assoc. with other forms of exercise
Resistance bands do not rely on mitochondria
🤦♀️PEM can occur after any exertion
Axcella used resistance bands=mito dysfunction
🚩No screening for PEM
🚩 Inadequate consultation of scientific literature in #ME#PEM
RESPONSE: we've done PPI & PROMS 😬 (this literally doesn't make sense)
🚩Lack of consideration to personal testimony that exercise does not help conditions with PEM
RESPONSE: we've done PROMS, open hypothesis - we're open to it not being helpful, there's no evidence that exercise can cause permanent damage to C19 patients
🧵Serious Red Flags for the #CISCO21#LongCovid Study
Researchers please listen to patients concerns & expand your knowledge to the history of #MECFS
You have a chance to stop patient harm
1. No mention of #PEM#PESE in the literature
After repeatedly asking if they screen for #PEM or take this into account - they have not responded in the affirmative.
This is the nub of the issue
75% of #Longhaulers have #PEM
46% are eligible for an #MECFS diagnosis
This means that our bodies cannot process exercise - think sugar diabetes
There is no magic where by giving us exercise because we can't do it means we will magically be able too
Super @BBCNews coverage of possible breakthrough treatment that dissolves the microclots, HELP Apheresis. Superb interview by @doctorasadkhan who tells it like it is!!! ✊ Let's hope this works, fast track funding is given & it's rolled out to all 🤞🙏
Vid 1: 🧵
🌟Patients' Charter for ME/CFS/PVFS🌟
🌟1st aim: for patients to put their signature for their needs to the Roundtable
It will be physically & electronically sent to NICE
Idea: to share on the 18th October to clearly state what we deserve?
🌟2nd Aim: Charter to be available to anyone who needs it (spoon saver).
It has been collectively written to help give a concise statement of the strong, supportive foundation for the medical care we deserve.
🌟3rd Aim: collaboratively create a Charter for #LongCovid #PVFS (Post Viral Fatigue Syndrome) is a term applicable to ME - yet this can also include #LongCovid #LongCovid community we need your help on this too - please sign🙏
There are many overlaps!